It feels important to (re) acknowledge the challenging nature of these times and I do sincerely hope you are all safe and well. I also want to thank those who have reached out to me at this time of deep grief, here, on social media and by phoning me or calling in. Words do not…
I am more than my ‘lived experience’ of dementia. Seriously. And I am much more than just a ‘Dementia Advocate’. True. Many years ago, I started advocating for people with dementia who are invited speakers to be listed on the program by more then their disease. Back then, not even the persons name was added.…
In 2016, I was interviewed by Jessica Kingsley Publishers JKP), soon after the lease of my book, What the hell happened to my brain?: Living Beyond Dementia. This is my response to one of the questions: Q: What would be your best piece of advice for others who are living with dementia? A: My advice…
When my father in law was needing more support than we could get for him to keep him in his own home, we felt we had no choice but to suggest he move into a nursing home. His first response was: “I’m much too young for a nursing home.” He was well over 70 years…
This wonderful memoir, written by my friend and DAI colleague, reinforces why it’s not ok to tell people with dementia to only go home to die, or that life ends with a diagnosis of dementia. As an activist (advocate?) for more 12 years, this book also reminds me how tragic it is that most advocacy…
In March, when I started this blog I went out to the clothes-line to get in some washing (mostly my underwear), and the line was empty. I went inside and thanked my husband for bringing in the washing, but also felt a little confused, as he would not usually put my clothes away, and I…
Lost for words Wretched in my grief Thank you For your love and support As we face the loss of our super cool dude Boris…
As the time to provide a submission to the Royal Commission into Aged Care Quality and Safety draws to a close, I remain deeply concerned nothing will change, in spite of the more than 8000 submissions, millions of dollars spent on the Royal Commission, and any likely outcomes or ‘recommendatons’. Historically, the Australian government chooses to…
‘Stop all the clocks, cut off the telephone’ Stop all the clocks, cut off the telephone, Prevent the dog from barking with a juicy bone, Silence the pianos and with muffled drum Bring out the coffin, let the mourners come. Let aeroplanes circle moaning overhead Scribbling on the sky the message He Is Dead, Put…
Ending confinement and segregation: barriers to realising human rights in the everyday lives of people living with dementia in residential aged care. This article was published on 25 Jun 2020, in the Australian Journal of Human Rights, by Linda Steele , Kate Swaffer , Ray Carr, Lyn Phillipson & Richard Fleming. Abstract: Human rights are increasingly being considered in Australian law reform…
Journal article by Linda Steele, Ray Carr, Kate Swaffer, Lyn Phillipson, and Richard Fleming, published 18 June 2020 in Health and Human Rights Abstract: This paper responds to growing concerns in human rights practice and scholarship about the confinement of people living with dementia in care homes. Moving beyond the existing focus in human rights…
Personally, I dislike being labelled by anything, including, or especially by a disease. Being labelled to my height, my skin colour, etc. is also offensive, and I simply prefer to be referred to by my name (the one I chose). Negative language and labels have the power to disempower us, as I spoke and…
Please join me this coming week for this important and free DAI Webinar. https://www.eventbrite.com/e/dai-webinar-dementia-human-rights-selfcare-and-covid-19-tickets-107760911788
“If you treat a disease, you win, you lose; if you treat a person, you win, no matter what the outcome.” (Patch Adams) The movie, Patch Adams (which I love), is based on the true story of a heroic man, Hunter “Patch” Adams, determined to become a medical doctor because he enjoys helping people. He…
